What is Your Role
I am the Senior Director of the Epilepsy Learning Healthcare System (ELHS) as part of the National Office team of the Epilepsy Foundation. I am a physician by training, having completed my medical education in Dublin, Ireland. I came to the Foundation in 2015, and previously worked as the Senior Director of Clinical Research. It was in that role that I first worked with the Rare Epilepsy Network (REN).
What is your connection to REN
My role in REN has evolved to include serving on both the REN Coordinating Committee and the Data Sharing Committee. Both of these groups are responsible for exploring and considering opportunities for the ever-growing rare epilepsy community, and helping in strategic planning for the future of REN. One area of particular passion for me is ensuring that the data so many individuals carefully and thoughtfully shared gets put to use for the greater good of the rare epilepsies. Click here to both view the Dashboard (previewing a subset of the patient and caregiver data) and to submit a proposal for REN data use. This rich dataset provides invaluable insights into rare epilepsies, and holds the possibility of unlocking new diagnostic and therapeutic approaches for one or many of them. We encourage all researchers in the rare disease space to lean into this resource, opportunities abound for cross-disease work.
What other work do you do in epilepsy
The other area where I am fortunate to work with the rare epilepsy community is in the ELHS (or “EL-LIS” as we affectionately call it). REN has been a supporting partner of ELHS since its inception, from the time we determined our vision: that all people living with epilepsy will live their highest quality of life, striving for freedom from seizures and side effects, and we won’t stop until we get there. The last piece of that message was strongly advocated for by the rare groups, to recognize that for many people and families living with a rare epilepsy, diagnoses, genetic answers and effective therapies do not always come easy or sometimes at all. It is critical that ELHS recognizes all epilepsy journeys and advocates for all of them – and this is at the heart of the work we do. Through a system of co-production in ELHS, patients and families work together with healthcare, community-based services and research professionals to improve health outcomes. These outcomes include improving quality of life, seizure control, and seizure freedom. To learn more about ELHS, visit www.epilepsy.com/elhs or contact firstname.lastname@example.org
By Kathleen Farrell, MB, BCh, BAO, Senior Director, Epilepsy Foundation, ELHS (Epilepsy Learning Healthcare System)